October 11, 2009

Walking Caregiver!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , |
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Warning!! The return of the body snatchers has begun!  Aliens from a newly discovered hidden planet just outside the orbit of Pluto, a planet named Pedometer Prime, have snatched both Mary Ann and me and replaced us each with one of their own, beginning the invasion.

Actually, the invasion has already begun. You can see them everywhere.  They are walking the sidewalks with a telltale look of superiority on their faces that seems to say, “I am walking and you are not!”  They threaten to take over by the sheer weight of their numbers as they outlive the rest of us.

My only hope is that a rainy day will come, breaking the power of the alien with which I am possessed.  However, I have heard that some of the aliens just move indoors to malls and gyms when it rains.  Frightening!!!

Actually, I am virtually immune to a long term stay of my resident alien, since the power of my laziness and lack of discipline is likely to drive him out soon, probably within hours.

Yes, it is true.  Yesterday when we were returning from the library and the requisite trip to G’s for Turtle Sundaes, I asked Mary Ann if she would be okay sitting in the car at Cedarcrest (a park that surrounds and includes the Governor’s Mansion) while I walked for bit.  There are many paths including one that is fairly level, in an open area including some picturesque ponds, a path about a mile in length.

The day was spectacular.  It was cool and crisp and clear.  The sky was the crystal blue of the approaching winter.  There was much pleasure just soaking in the beauty of the fall colors and the scents of Autumn.  I suspect there may have been a trickle of endorphens assisting since that comparatively short walk got this little exercise averse body pumping blood to every extremity including my brain.

If that is not enough — and this is what assured me of the alien presence — I got up this morning, earlier than usual, put the Lifeline around Mary Ann’s neck so that it would be within reach as she remained in bed, layered a shirt and jacket for the thirty degree morning and walked a little over a mile in the neighborhood.  I hope this is not a sign of some cataclysmic event bringing all life as we know it to an end.  Let’s hope not.

And now, here I sit at the computer writing this post and it is still morning!!!  Having spent a week in another time zone, our body clocks shifted just enough to make it possible to get up and hour earlier without so much effort.  Another odd but pleasing quirk is that Mary Ann has been sleeping well at night.  Understand for us a good night’s sleep still includes a couple of trips during the night to the commode and a couple more very early in the morning.  Mary Ann slept well every night during our trip and has slept well the last two nights.  That could, of course, change tonight.  If it does, it does.  If the good nights continue, we will just enjoy them.

Added hours in the morning create both a challenge and an opportunity to get out of the house a little more.  I have inferred from Mary Ann’s sleeping so well on the trip that staying awake all day does help the nights go better.  That, of course, seems obvious, but in the past staying up all day has not necessarily correlated to sleeping well at night.

Well, we had better get out of the house before we return to our usual vegetative state.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

September 28, 2009

Solutions Seem So Obvious!

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Then why don’t we act on the obvious solution and solve the problem!

She napped for over five and a half hours today.  She napped for over three and a half hours during the day yesterday.  I can’t remember how long she napped the day before that.  Isn’t it obvious?  Just keep her up during the day and she will sleep through the night.

I just read an article in the online newsletter from ScienceNews.  Apparently a recent study using rats associates sleep deprivation with an increased risk of experiencing Alzheimer’s Dementia.  The assumption was that the sleep problems were a result of the disease.  It now seems possible that they are part of the disease process itself. (Yes, I, too, wonder how a technician can determine if a rat has Alzheimer’s Dementia —  actually, I do know the answer to that, but I am not saying here — suffice it to say, once the information is obtained, the rat no longer needs his/her pension.)

Back to the solution.  Why not just keep her up all day?  I am sure that solution seems obvious.  If it is hard to keep a two-year-old awake when those eyes fall shut and that little body goes limp, if it is hard two get a two year old up early from a nap without a major meltdown, imagine trying to get a strong-willed, independent adult who has a right to make her own choices up from a nap when she wants and needs very much to continue sleeping.

I can remember a day some weeks ago when I managed to keep her up all day with trips here and there.  She was restless that night anyway, up and down for most of it.  On the other side of it, while things may change at any time, after having that more than five and a half hour nap today, she was tired and went to bed early this evening.  She has been sleeping soundly for the three and a half hours since then.

Obvious solutions don’t always work.  With that said, I admit that it would make sense to try to get her to sleep less during the day to increase the likelihood of sleeping soundly at night.  One of the struggles with being very assertive in waking her up is that when she is napping, I have time to myself.  I am able to concentrate on tasks and accomplish things that can’t be done when Mary Ann is awake, up and about.

Today was a spectacularly beautiful day, warm and breezy.  With the video monitor on the table next to me, I was able to sit on the deck and read, while enjoying weather, the waterfall, the birds (hummingbirds buzzing over me regularly).  I finished the book on weight control (The Volumetrics Eating Plan) with time left over for a snack of potato chips (just kidding).  I did try to get Mary Ann up a number of times after the first three of the five and a half hours, but she just couldn’t do it.  She had said she felt pretty bad when she laid down this morning — no wonder after two nights of almost no sleep.I knew she needed the rest.

I guess, if I appreciate the time the daytime napping gives me, I shouldn’t whine about the restless nights.  I concede the point.  The glitch is that I am not getting much sleep either.  I could try to nap whenever she naps.  That also makes sense.  Were I to do that, my every waking moment would be centered around her needs.  To survive and remain useful to Mary Ann, I need some time to myself when I am awake.

Sometimes obvious solutions don’t really work as well as logic would suggest they should.  I suspect that those looking in from the outside lose patience when obvious solutions are not used to solve the problem about which the Caregiver is complaining

As I was preparing to write this post, I thought about the legions of Caregivers out there.  First of all, every parent has experienced the challenges of caregiving, unless they have abandoned their responsibility to their child[ren].  Single parents, especially those with more than one child have challenges I can’t even begin to comprehend.  There are many who have responsibilities to their children (they never end, no matter how old the children become) and at the same time responsibilities in caring for their aging parents.  There are those who have severely troubled children, physically and/or mentally.  They struggle to care for them, some have to make tough choices demanding allowing others to do the care at a facility outfitted for that care, having around the clock staff to give that care.

I have the luxury of having only one person who needs my full time attention.  Gratefully, our children do not need our care.  In fact they are members of the sandwich generation, raising their children and concerned for our needs as well.

All in all, I guess I should stop whining.  I won’t, but I should.  I think those who are full time Caregivers need some whining time.  Blogging is great, since it creates the illusion that there are people listening.

Whether anyone is listening or not, it helps to talk about it.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

September 26, 2009

Caregiver’s Self-Care

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , |
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She is cute as ever!  We were dressed to the 9’s (whatever that means) for the church’s new directory pictures.  My contribution was to wash Mary Ann’s hair: the rest is in her genes. That combined with her ability to stop eating when she is full, has kept her slender and very nice looking.  As is apparent in the picture, I married up. 

I, however, have combined genes (Dad) and a seemingly uncontrollable appetite (Mom) to produce enough stored energy to last many weeks were I to end up on a desert island with no food.  It has, of course, gathered in the worst place for increasing the likelihood of numbers of diseases of the aging.  What is in my favor is a family history that for the most part does not include Cancer, Heart Disease or other life threatening diseases.  Most everyone in my immediate family has died of old age, or is still living.

That family history does not impress my Cardiologist.  Nor does it help me tie my shoes, or avoid the endless shrinking of clothing in my closet.  My shoes still fit!

On the spur of the moment, I went to a local Physical Therapy Center for a free consultation introducing a weight control program including both dietary counseling and an exercise program.  I liked everything about it (except the diet and exercise parts).  There was even the possibility of something that might benefit Mary Ann while I was doing the exercise program at the facility.  Then came the “other shoe” as they say.  The numbers took my breath away.

I need to stay healthy since I am not the only one who depends on my health and well being.  My health is more important than having a bunch of money in the bank.  One problem is that the bunch we have is of a size that a great deal of care needs to be taken when spending it.

There is a simile that I find very useful and use often.  Some things are like putting out a match with a fire hose.  I am not sure the amount I need to lose is worth that much money.  I would be right in the middle of normal on the weight chart if I were only six inches taller.

The truth is, the chart I am looking at puts me just past the line between overweight and obese — just barely, but obese.  Charts vary, and in some I am not categorized quite so harshly.  Nonetheless, clearly there is need for better habits and a lowered risk of problems emerging.

One of Mary Ann’s Volunteers has access to lots of health information, and has found a book that offers one approach to developing healthier habits.  She brought the book over early this evening.  The Cardiologist’s nurse had given me a copy of my blood work with the instruction to double the cholesterol lowering medication I am taking, Today, I received another copy in the mail, this time from our GP who got the same blood work report.  Today’s copy included a handwritten note, “LDL is too hight, needs to be around 100; work with exercise and diet.”  Of course in the last couple of weeks more studies have been published suggesting that belly fat increases the likelihood of getting Cancer, Heart Disease, Dementia, and Type II Diabetes.

A contributing factor to all of the above diseases is serving as a Caregiver.  The statistics are not good for those of us in a Caregiving role.  There are some things that cannot be changed.  I suppose common sense suggests working on changing those things that can affected by the choices made.

All of this comes after receiving the cooler from Omaha Steaks yesterday (a great sale), and enjoying the buy one, get one free Blizzard at Dairy Queen this afternoon (it was the annual anniversary gift for signing up online to join the Blizzard Club).

Rest assured, if there is any change in diet resulting from all this, or any exercise added into my daily activities, there will be whining in posts yet to be written.  Consider this fair warning! 

By the way, it feels good to have our Christmas shopping done for our children.  They will receive fresh new pictures of their parents to replace the old ones in the shrine.  We are so thoughtful.

It appears that tonight will be another tough one.  The raccoons are back in the bedroom.  Mary Ann wants me to call Animal Control.  I hope she can settle soon.  We will see what the night brings.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

September 23, 2009

Carotid Artery/Heart tests — No results yet.

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Warm gel is a good thing when having an echo-cardiogram and a carotid sonogram.  Yesterday was Mary Ann’s every six month check of the lesion in one of her carotid arteries (the ones in the neck that supply the brain with blood), and her every six month check of her heart, the valves and general condition.

The tests happen so regularly since at some time, should the lesion in her carotid artery grow past a certain point, the question of surgery will come up.  She has already had one stroke, probably caused by bits of plaque sloughed off from that lesion.  The most we can hope for is very little change in how much of that artery is blocked.  I will admit that neither Mary Ann nor I am much interested in a major surgery.  We would certainly discuss the option.  I would not presume to know for sure what Mary Ann might want to do if surgery is suggested.  Her Mom had it when she was in her 80’s, and she did very well.

What the echocardiogram shows could have some impact on medications.  It was interesting to watch the med tech do the test.  She had a student with her.  She described what she was looking at to the student as she pulled up each view of Mary Ann’s heart.  I had a great view of the screen during the entire test.  It was helpful to me to hear her point out and name the parts of the heart on the screen.  Having watched the screen for the last few echo-cardiograms, I am getting fairly familiar with the images on the screen.  It helped this time to have a running commentary on what I was seeing.

What was especially interesting was a little mini-drama, as the med tech was describing what she was seeing to the student.  At one point there is color added to the screen.  The red indicates blood coming toward the probe, the blue indicates blood moving away from the probe.  When the med tech was checking the valves using the color mode, her voice lowered as she spoke to the student.  I inferred that the movement of the colors was indicating leaking valves and she did not want to break protocol by revealing that within Mary Ann’s and my hearing.  I had been quiet (unusual for me) until then.  I decided to relieve her distress by mentioning Mary Ann’s problem with leaking heart valves. The med tech’s response indicated my assessment of her reaction had been correct.  Up to this point, the leaking is not severe enough to warrant raising the surgery option.

Both Mary Ann and I had blood tests a week ago.  Her orders came from our GP (thyroid and cholesterol check), mine came from our Cardiologist (cholesterol).  Mary Ann is the one with problems, right?  Her numbers were great!  Mine produced a message from the Cardiologist to double the dosage on my cholesterol lowering med.  Mary Ann’s annoying ability to stop eating when she is full, as well as her distaste for leftovers and much of what I cook, seems to be serving her well in the blood chemistry department.  My inability to stop eating until everything is gone on my plate and all the containers on the table, does not serve me so well in the blood chemistry department.  I suspect a program of improved diet, exercise and weight reduction is in my future — perhaps I should have a snack and lie down until that thought passes.

We got a copy of the written results of our blood work yesterday after the tests were done.  Mary Ann’s results revealed the continuing reduction in her kidney function.  The surface of her kidneys has hardened due to decades of high blood pressure.  If you have read earlier posts about her struggle with Orthostatic Hypotension (low blood pressure when standing, producing fainting spells) you will catch the irony.  She is now taking medicine to raise her base blood pressure to reduce the problem of her BP lowering too much when she is standing and walking.  If I am reading the lab report correctly, she has just moved into stage three of five in her Chronic Kidney Disease. The good news is that we all have so much kidney capacity that it could lower to 30% of full functioning without becoming dangerous. When I include that sort of information, remember that I am not a doctor.  Don’t take my word for it. A few years ago a very candid Nephrologist told us that Mary Ann would likely die with Chronic Kidney Disease, not of it.  At that time we all agreed not to treat the kidney disease since the treatment would make the fainting worse by lowering her blood pressure.

As the tests were going on, I thought about how scary all the test results can be.  When we first were told about each of the problems, there was that feeling in the pit of the stomach that the end might be nearing.  After years of monitoring the results of the tests, it is just more information confirming what we already know.  Even if there is something new, Mary Ann has faced down so many medical problems for so many years, we just take it in stride.  Mary Ann could die in ten minutes, ten months, ten years, or more.  So could I.  Death lives just on the other side of life.  Coming to terms with that provides a sense of peace, and affirms the sweetness of the life we have at any given moment.  Our spiritual foundation steals from death its ultimate power to destroy.  Neither of us longs for it.  We both recognize the pain that is left to those we leave behind.  At the same time, we recognize our mortality and have learned to live with it.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

September 22, 2009

Sleepless Nights: Most Don’t Understand.

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It just sounds like complaining, endless whining.  Caregivers are often very boring conversationalists.  Someone says, “Hello, how are you?”  Caregiver responds, “I was up fifteen times last night and eight times the night before.  We slept late in this morning, but I can’t concentrate enough to read anything more than the captions on pictures.  Simple tasks seem overwhelming, and by the way, what is your name, and what is it that you just asked me?”

Last night was a moderately restless night for Mary Ann.  We were up maybe once in each hour during the night for one thing or another.  That pattern is more bearable than the really restless nights when it is multiple times throughout the night.  She got up early this morning, but napped for a couple of hours. It just doesn’t seem to work for me to try to turn on the napping switch and sleep whenever she takes a nap during the day.  Anyway, I relish the time to do the things I can’t do when she is awake and in need of help.

The truth is, there is no way to communicate to anyone who isn’t in the same circumstances just how hard it is to get pretty much of anything done when the sleep patterns are completely erratic, with no ability to plan when there will be sleep and when there won’t be sleep.

While I was on the retreat in Oklahoma, our Daughter Lisa stayed with Mary Ann.  The first of the two nights, Mary Ann was very restless, and Lisa didn’t get much sleep.  Mary Ann was up early as she usually is after a restless night .  The next night, they both slept like a rock and slept late into the morning.  When we talked after I returned, it was apparent that she had a sense of what it is like to have the kind of erratic sleep patterns that are our normal experience.  She, of course has two young children and knows what is it like to have difficult nights and little sleep.

It is just nice to have someone in the circle of support who understands how hard it is to plan and do anything when there is no sleep pattern.  One of the reasons that I enjoy the trip to the Spiritual Renewal Center is that the many hours of uninterrupted sleep seem to return my ability to read and understand what I am reading.  I can’t say that I have read any of the book on Quantum Physics and Theology other than on the Oklahoma Retreats.  I often feel embarrassed at how little I manage to get done each day, and how poor my memory has become.  I am hoping that both are a function of the sleep patterns rather than the disintegration of my brain.

One of the problems the lack of sleep increases in Mary Ann is the intensity of the hallucinations.  I have mentioned that often before.  Today, she got up and headed toward the bedroom.  I asked what she was doing.  She was reluctant to tell me, probably not wanting to hear my opinion on whether or not she should be trying to do what she was planning.  She was going in so that she could sew a button on.  I don’t know what button needed to be sewn on to what.  She had just asked me to help her take off a corduroy shirt of mine that she uses as a warm layer to wear when she is cold.  After I took it off, she hung on to it, rather than letting me put it on the railing post, as usual.  I inferred that she had in her mind that there was a button that needed sewing back on that shirt.  There were no buttons missing.

I did not interfere with her plan.  I decided I would only intervene if she ended up with a needle in her hand and was hurting herself.  I stayed out of the bedroom as much as possible while she got out some balls of thread (probably more for cross stitching or something like that) and handled them for a while. I never saw a needle in her hand.  I just waited it out, helping a little when the thread on a couple of the balls got tangled.

I still don’t know exactly what was in her mind, nor do I know what went through her mind as she finally put the balls of thread back into the drawer and gave up on the plan.  I do know that it is painful to watch her confront the losses she has been suffering for so many years. The losses have been going on for twenty-two years in one way or another, sometimes more slowly than at other times.  Today was one of the times the contrast was especially obvious between the skilled sewing (made our first drapes, has made many quilts) she has done in the past and the inability to so much as get a needle, the thread and sew on a button — as well as the confusion about what was or was not there needing the sewing.

While I am busy complaining about the frustrating sleep patterns, she is busy trying to survive the loss of so much of what brought her joy and satisfaction throughout her life.  I guess I just need to finish this and get to bed so that I will have less to complain about.  So far tonight she has stayed asleep.  We will see how the rest of the night goes.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

September 20, 2009

Caregiver’s Life Preserver, Vol. 4 – Followup

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Remind me how much I loved weeds and bugs as a child.  I seem to remember writing something about that in an earlier post.  I just about had my fill of weeds and bugs on this trip to St. Francis of the Woods.

I have always loved the outdoors, but I have also always loved being comfortable.  Trudging through waste high, sometimes head high, weeds for a couple of hours, bugs surrounding me, checking me out at close range, stretched my idyllic view of the outdoors to the limit.

I remember walking the woods at my parents’ place in Northern Illinois, loving everything but the deer flies.  They kept me from idealizing the outdoors beyond reality.  Then there was the Poison Ivy.  The world of nature can be a hostile place.

This trip to St. Francis of the Woods was different from the last few times I have gone.  When possible, I usually go after the first frost and before the bugs have come out in the spring.  Cool and crisp air, dried weeds and clear skies have welcomed me the last few years.  This time it was warm, muggy and cloudy.

With that introduction, you might suspect that this trip was not a good experience.  It was.  First of all, while I am concerned for the environment and the well-being of all creatures, insects included, it seems to me that the person who invented the insect repellent Deet should be awarded the Medal of Honor.  I was not bitten by one mosquito, nor did I find one tick on my body, and while the bugs were everywhere, when they landed on me, they didn’t stay for long.

One benefit of coming at this time of the year was that there were flowers everywhere.  The sights were beautiful.  The flowers drew butterflies.  There were all sorts of butterflies of different sizes and colors.  Every once in a while one or two would land on me as I walked through the weeds.  There was one particular species that caught my eye.  It was probably a Fritillary, but I am way outside of my comfort zone in naming a butterfly other than a very few.  It was fairly large, and the brightest, almost, iridescent orange.  There might be as many as three flying around one another in a cluster.

There are now a couple of bee hives at the corner of one of the fields that I walk through.  I gave them a fairly wide berth.  Through the binoculars, I could see hundreds of bees flying in and out and all around the hives.  I am not particularly fearful of bees, but I didn’t want to have any unnecessary encounters by moving into their home territory.  I noticed as I walked through a nearby field, that the flowers were covered with bees.  St. Francis should have a great harvest of honey when the time comes.

The first evening’s trip through the woods provided no bird sightings at all.  The next day, there was more activity.  I was snorted at by some deer hiding in the woods as I walked by.  At one point a couple of does ran through the weeds in front of me from the woods on one side to the woods on the other.  There were a couple of groups of White Pelicans flying overhead, appearing to be headed the wrong direction for a fall migration.

It was hard to find a spot to put my three legged stool so that I could read a bit.  I didn’t want to be completely buried among the weeds.  I managed to find a spot with short enough weeds that I could sit, eat an apple and then read a very few pages.  The muggy, warm air and flying bugs around my sweaty brow made it uncomfortable enough to discourage me from staying long. I did catch sight of a flock of Common Nighthawks going by.  They are not often seen in the daytime except when passing through in the spring and fall.  Nighthawks are in a family of birds called Goatsuckers.  I just get a kick out of knowing that and saying the word “Goatsuckers.”  I need to check online some time to find out how that name was chosen for them.  I wonder if it had anything at all to do with goats?

I walked down to a newly discovered pond very close to the cottage I was staying in.  The pond was sort of ugly and messy looking, very small.  I saw a large turtle sunning itself when I came closer to the pond.  It slid into the water since I was too close for comfort.  I looked at the water through the binoculars to see if I could locate more turtles under the water.  Then I saw him.  I can’ t really know for sure how big he was, since he was just under the water at the edge of the pond nearest me.  The light refracting through the water can make something look bigger than it is.  It was a Snapping Turtle that appeared to be close to two feet long and a foot and a half wide.  He looked far too big to be living in such a small pond.  I watched him for a long time, and when he moved, I was glad he turned away and moved down farther into the pond.  I would not have been interested in him coming my way.

The most meaningful and valuable time on this retreat was the four and a half hours of catching up with a friend from the Oklahoma City area that I hadn’t seen in over thirteen years.  I have to say that John is as close a friend as I have ever had in my six and a half decades.  During the nine years in Oklahoma City, John and I spent many hours early in the morning at Ingrid’s German Deli talking about our faith and journey we were on living it out, John caring for Sherrie, dying of Cancer, and me dealing with the impact of Mary Ann’s Parkinson’s on our household.

When I went on ahead of the family to start serving the congregation in Bethany, Oklahoma, I lived for five months with John and Sherrie, and their children, Hope and Joel.  I cannot imagine more gracious hosts.  Their spirituality was a marvel to behold.  I have been around lots of folks who are committed to their faith, and sharing it with others.  John and Sherrie did it with such genuineness and humility that those around them never were made to feel inferior.

I had the privilege of ministering to and being ministered to by Sherrie as the Cancer entered her life and became the means through which she touched the lives of so many on her way to her death — and life with the Lord on the other side of death.  I had the additional privilege of conducting her funeral, attended by so many that the Sanctuary couldn’t hold them.

If that was not enough, I had the joy of performing the marriage of John and Peggy, as each was led to the other at precisely the right time to begin building a new life together.  It was refreshing to hear how their spirituality has grown and how their life together has unfolded in the years between then and now.

Not only did the retreat provide the refreshment that comes from engaging the natural world at close range, being fed by a meaningful friendship, but I probably accumulated almost twenty-four hours of uninterrupted sleep in those two nights.  This morning there was a gentle rain with soft rumbles of thunder on occasion in the background, providing the perfect setting for lying in bed, sort of semi-conscious, just savoring the moment.

All went well with Mary Ann while I was gone.  Daughter Lisa had some good quality time with her Mom, and Son Micah, Becky and Chloe were able to come over so that we could eat Pizza together tonight.

The time away provided the opportunity to think through how things are going for Mary Ann and me.  As always, there has come a renewed resolve to be more effective as a Caregiver.  Whether that resolve will result in any changes in what I do and how I do it remains to be seen.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

September 16, 2009

Caregiver’s Life Preservers, Vol. 4

Posted by PeterT under Daily Challenges, Family, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , , , , |
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This one is a veritable Life Boat, not just a Life Preserver.  Thursday morning (day after tomorrow) I will get in the car and drive a little over five hours on the Interstate through the Flint Hills and on into Oklahoma to St. Francis of the Woods Spiritual Renewal Center.  I will stay over two nights and return Saturday afternoon.

What about Mary Ann???  Mary Ann will have a great time while I am gone.  She will have our Daughter, Lisa, all to herself for that entire time.  Hopefully. our Son, Micah, and family will be able to join the party at some point.  Lisa is flying in from Kentucky as a gift to both Mary Ann and me, so that we can have a break from one another.  Admittedly, 24/7 does wear on both of us. Our Son-in-Law, Denis, will be serving as both Dad and Mom to the girls for the time Lisa is gone.

I have described St. Francis of the Woods in earlier posts.  Lisa provided the opportunity to go some months ago.  While I am at St. Francis, I will walk for hours, read, meditate, all among beautiful wooded paths and open fields.  The Renewal Center includes a 500 acre working farm.  There are only three cottages in the part of the property on which I will be staying.  The cottages are not in sight of one another, so it is not unusual to see no one for hours.

Maybe my love of solitude is the result of being the youngest of five children by so many years that I was raised almost as an only child.  I spent much of my childhood outdoors by myself.  I loved it.  I don’t really remember ever feeling lonely when I was outdoors in a natural setting.

I will take with me a very small three-legged stool strapped to my backpack so that I can stop to sit and read.  I will read some Scripture, a book on Spiritual Formation, and a book titled Quantum Physics and Theology, written by a Theoretical Physicist who later in life became an Anglican Priest.  I will carry my binoculars and look for birds and other wildlife.  I will watch the sunset from a wonderful spot on a hill that provides a panorama to the west stretching for miles.

I will probably sleep for many hours.  At this point, it is quite an unusual experience to have uninterrupted sleep.  I have checked the weather forecast for Coyle, Oklahoma (the nearest town — very small).  The weather is predicted to be partly cloudy, in the low to mid 70’s during the day and the upper 50’s at night.  That would be hard to beat.

One treat that may or may not materialize is a visit with a very good friend who was a member of the congregation I served in the Oklahama City area.  As a physician attached to a University Hospital, his schedule might not allow us time to talk.  I ministered to him and his family as his wife battled terminal Cancer.  Actually, we ministered to one another as we dealt with the Parkinson’s at the same time.  We spent hours at Ingrid’s Deli early in the morning a couple of times a week processing our experiences.  We haven’t seen each other in over thirteen years.

Since there will be no computer access at St. Francis, there will be a few days break in the postings here.  The only electronics at the cottage will be the portable CD player I am taking along.  By the way, there is a fully equipped kitchen including a microwave and, gratefully, a coffee pot.  I will bring some of those frozen leftovers from the freezer.  Cereal, fruit and granola bars will fill out the meals.

As I have continued this series on a Caregiver’s Life Preservers, I am wondering what Mary Ann would consider to be her Life Preservers.  I am not sure our current capacity for communication will provide the answer to that wondering, but I may just ask anyway.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

September 15, 2009

Caregiver’s Life Preservers, Vol. 3

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , , |
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When Mary Ann got up from her chair once this afternoon, as usual, I got up from my chair to ask where she was going so that I could help her if needed.  She came the few steps toward me, placed her hands appropriately and began to dance.  This will be no surprise to those who know me well, but even after 22 years of Parkinson’s Disease, several heart attacks and blocked arteries, a stroke, a life-threatening bout with pneumonia, and now a couple of years into Parkinson’s Disease Dementia, she can still dance better than I can.  I stood and swayed a little, while she actually danced.  This is certainly a confusing little world in which the two of us are living.

The last couple of days have been better than the one I recounted in my last post.  Yesterday, Volunteer Edie came in the morning while I headed up to the lake to read, listen to music and watch the wildlife.  As always, Edie made a full and tasty meal for us, so Mary Ann actually ate well.

The meal I had prepared the night before did not thrill Mary Ann (pork chops, stir fried fresh veggies from parishioners’ gardens, and Uncle Ben’s butter and herb rice cooked in chicken broth).  That Saturday was pretty much a bust from beginning to end.

Sunday not only included the good meal that Edie had prepared, but there were football games.  Mary Ann is the more enthusiastic football fan in the house.  Both the Chiefs and the Bears lost, so she was not as pleased as she would have been had either or both won.

Today was a pretty normal day.  Zandra came to give her a shower.  That happens Mondays and Wednesdays.  We got out to the library, which she loves.  The library happens to be near G’s frozen yogurt, so there was the obligatory stop there.

A Volunteer, Jolene, came to spend time with Mary Ann after supper while I headed up to the spot with the view about ten minutes from our house.  I took with me a number of CD’s that I had picked up at the library.   After listening to one of the Celtic CD’s, I put in a CD of Taizé music.  Taizé is a community in France to which young people in particular come to be spiritually renewed.  I haven’t been there, so I can’t really describe what it is like other than what I have heard and read.  The Taizé community is known worldwide for their worship life and liturgical music.  The music is simple, with refrains that are repeated many times, often sung in harmony by whoever has gathered for worship.  Taizé music is in many languages.  It seems to be a place at which national boundaries cease to divide.

The music felt like a life preserver to me this evening.  It is my hope that I will find accessible Taizé resources to add some more disciplined regular times of spiritual refreshment in my days.  I suspect it might help raise the quality of care for Mary Ann and the quality of life for both of us.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

September 12, 2009

Caregiver/Spouse Great Daytrip!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , , , |
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How could it be anything but great when the destination was Braum’s Ice Cream and Dairy Store, and the reward was one Hot Fudge Sundae with pecans for me and one Pecan Caramel Fudge Sundae for Mary Ann?

We spent three or four hours mostly on the road, country roads, traveling nearly 150 miles by the time we returned home.  Madness, you say?  Not really.  While the destination was great, the trip was at least as great.

I am not much of a reader and, as a result, not a writer.  I envy those who have the vocabulary to write descriptively in a way that gives the reader the feeling of being there, experiencing the sights and smells, the layered depths of panoramas that could never be captured in a two dimensional medium.

I am at a loss to describe just how beautiful the day was, the fields and flowers and farms, the colors and textures of this Eastern Kansas landscape.  Between our fifteen years in Kansas City and the almost fourteen years here, this is just about the strangest summer we have ever experienced.  Throughout the summer there have been only a half dozen or so days that were the usual impossibly hot days.  Other than those few days, there have been comfortably warm days and cool nights punctuated every few days with a rain and thunder showers.

The plant life now looks a little like what we saw on our trip to Alaska a number of years ago.  Things are giant.  The Kansas Sunflowers tower over the fields.  The Soybeans look like a different crop entirely they are so tall and deep green.  The corn is tall and only now transitioning into its dry phase, readying for harvest.  Some of the corn fields are still green.

There are huge round bales of hay everywhere.  The fields that have been cut and the bales removed are now that bright green again as in Ireland.  It is as if time has just folded over and spring has become intertwined with fall.  The Sumac is beginning to change color.  The Milo is that rich dark copper color, while that bright fresh green of spring is everywhere in between.

Then there are the flowers — fields of them.  Everywhere that isn’t tilled ground, cut pasture, someone’s lawn, buildings or roads there are masses of Kansas Sunflowers, yellow blossoms of all shapes and sizes and kinds, blue wildflowers, purple thistles in blossom, white Snow on the Mountain and other white flowers, all mixed together with the dark tones of mature weeds and grasses fully in seed.  It has always intrigued me that in nature, colors that would never be put together by anyone aware of what colors should go together, look just right when mixed together in the patches between the road and the fence or stretching out in an uncut field of weeds.

The Flint Hills can take a person’s breath away.  They extend as far as the eye can see.  Today there was enough moisture in the air that the mist differentiated clearly layer after layer after layer of hills as they rolled off into the horizon.  The closer hills on the fringe of the Flint Hills were separated from one another by ribbons of trees, wherever water settled after rains or there was a creek flowing (maybe trickling — this is Kansas) between and around them.

The moisture in the air at the moment also provided wonderful cloud formations to see.  Our trip began in mid-afternoon and extended into the very early evening.  The sun began to provide shadows that had an interesting effect on the Sunflowers.  Not only do the sunflowers tend to face the sun and follow it during the day, when they were out of the direct sunlight, the color seemed to change from the bright yellow to a deep rich golden buttery color.

There were few birds to be seen, a hawk lifting up and passing just in front of the car, a few Scissortail Flycatchers, the ubiquitous doves and starlings, and a cluster of Turkey Vultures circling in one area.  By the way, I discovered that a group of Turkey Vultures when perched together is called a “wake” of Vultures. That may come from their sadly hanging heads when they perch.  Then there is a Parliament of Owls — but I digress. I saw no owls.

While Mary Ann doesn’t enjoy the rides in the country as much as I do, she did read some in a book she has on the trip to Braum’s.  She seems to be able to read with the outside light in the car far better than she can with the lights in the house.  She put the book away for the trip back and seemed to enjoy the sights.  All in all, it was a good day.

Just an update on the smoke alarm excitement last Sunday morning:  The security system Tech came today.  He concluded that at some point one of the techs had entered a code incorrectly, resulting in no signal from the smoke alarm reaching the dispatcher’s console.  He also suspected that dust in the sensor had made it hypersensitive, resulting it going off with less smoke than should have activated it.  By the way, he was interested in seeing the manual that came with our system around twenty years ago.  He had never actually seen that original book.  He assured me that the book was still accurate and that our system was fully functional even though old.  He did not have with him or try to sell me an extended contract — for which I was grateful. There was no charge for his services.  Now there is a reversal of the good news/bad news of Sunday morning.  The good news Sunday was that there were no fire trucks roaring into the neighborhood as the horn went off.  The bad news was that no fire trucks came when the sensor went off — what if it had actually been a fire?  Now comes the reversal.  The new good news, the fire trucks will come if there is a fire, the bac new, they will come if there is no fire and I don’t get the alarm turned off soon enough.

Well, unfortunately, the evidence on the monitor seems to be pointing to another restless night.  We will see. I keep forgetting to tell the bath aid, who comes twice a week and changes the bedding on Wednesdays, to use only the white or checked sheets and not the print with the flowers.  Mary Ann always has problems seeing the images on the print sheets as something moving or spots or threads needing to be removed.

For any who are concerned that the time stamp on these posts seems to indicate that they are written in the wee hours of the morning, the time stamp is Greenwich Mean Time, five hours ahead of Central Daylight Time.  It is now a little after Midnight, not 5am.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

 

September 11, 2009

Too Much Sleep, or Just Right?

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Therapeutic Activities | Tags: , , , , , , , , , , , , , , , , , |
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Sleep that knits up the ravelled sleave of care
The death of each day’s life, sore labour’s bath
Balm of hurt minds, great nature’s second course,
Chief nourisher in life’s feast.
~William Shakespeare, Macbeth

No, I did not retrieve that quotation from those English classes in which we had to memorize passages from Shakespeare.  I did remember enough to look it up online.  The only literary passage I actually remember is a sentence or two of the Prologue to the Canterbury Tales, which we were required to memorize in Middle English.  It was Senior English at West Aurora High School taught by Mrs. Winteringham.  When asked why we should memorize the Prologue to the Canterbury Tales in Middle English, she told us that some day we would be riding a bus and sit next to someone of the opposite sex whom we would impress by reciting it and in doing so begin a wonderful relationship.  At least that is how I remember her answer.

Sleep!  What a wonderful and delightful gift we have been given.  Between 7pm last evening and 11:30am this morning, Mary Ann and I accumulated a total of 28 hours of sleep.  I slept from shortly after 11pm (early to bed for me) to 10:30am this morning (could have slept longer), and Mary Ann went to bed and to sleep at 7pm last evening and woke up just before 11:30am.

Why so long?  Who knows?  We have had a number of restless nights.  I claim the first few hours after Mary Ann goes to bed as my own personal time, listening to music, writing a post on this blog, doing household tasks, occasionally getting caught up in a movie on television.  I pulled out the video of Riverdance and watched it again the night before last.  I can only guess that the restless nights, staying up too late and the hint of some virus or other trying to get a foothold drove my need for sleep.

Mary Ann, of course, has also had restless nights, sometimes for a good portion of the night.  One of the symptoms of the Parkinson’s Disease Dementia (a Dementia with Lewy Bodies) as it progresses is excessive sleeping, long nights and/or naps during the day.

Whatever the reasons for the long night, we both felt better today.  Mary Ann was sharp and funny and pretty much her old self for a good portion of the day.  There is continuing research on the function of sleep in humans. Some need more, some need less.  Some who study sleep seem to question the need for it.  I think Shakespeare nailed it.  Sleep provides a way not only for our bodies to rest but for our minds to file and sort and build links in the database, process events, and just generally unfrazzle.  That is a technical term used in the neurosciences — or not.

Speaking of which — I think it is time for some unfrazzling.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.


 

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